Help! What Am I Reacting To?

Sorry for the long post. I don't always post when I get sick because I feel like a broken record, but I just need to ask for everyone's advice, again!I've been having a rough few days. For the last two nights I've woken up at 3am and not able to go back to sleep and my gi system feels stopped, sure signs that I've been hit. I'm constipated with stomach pains, bloating, trouble urinating (just at night) gas, and as of today, dizziness. Because I don't seem brain fogged/mood affected I'm thinking this time it may be a dairy or soy reaction. It's not easing up, so I'm wondering if I'm being hit repeatedly by something I'm having at home. But I can't figure out what's causing it, so I'm really stressed out. Usually I can take a guess, even if I have no way of knowing if I'm right. This time I have no ideas.

I'm feeling soooo frustrated because I never seem to feel well for more than a few weeks at a time before something hits me. I've been gluten free for almost 1.5 years now and the whole cycle seems never ending, partially because I'm sick for so long after I get hit (I'm not even sure how long it really is). Even when I don't have other symptoms, I'm often struggling with constipation - I can't get a handle on whether I'm cc'd, getting too much/too little fiber, sibo'd, or what.

I don't go to restaurants (other than very rare Sushi with an ultra-careful chef) and our house is totally gluten, dairy and soy free except milk for my husband's coffee and the occasional tempeh he makes in his own pan. Pots/pans, kitchen is not a concern - it's all safe or been replaced and husband has his own sponge/mug for coffee and tempeh. Work is my biggest cc fear, because I'm surrounded by gluten guzzlers all day. I'm ultra paranoid about touching stuff, washing my hands, etc. I do pet the office dog now and then, but always wash my hands right afterwards.

About 3 weeks ago a new Vit B12 complex I tried (Nature Made) got me for about a week (felt like gluten and it hit me really hard). It was definitely the supplement - I hadn't introduced anything new and I felt the trademark severe stomach pain a few hours after having it. I know many people on this board are fine with this supplement, which is even more discouraging to me. The company does manufacture a B12 with wheat, so cc is a definite possibility.

A few weeks before that I tried Erehorn gluten free rice crispies and again got hit. They also manufacture on shared lines. So I can't do those. Sick for another week.

Back to my current predicament. On Saturday I had a small amount of green pepper (peeled and cooked). I've noticed I don't do well with green peppers and I've been testing out if I can get away with any amount. Seemingly no, as I had some gas and stomach pain that evening and the next day. However, the issues were gone by late Sunday, and I don't think this would still be the problem. I have never noticed the green pepper issues to go on for days like this.

This current episode started Monday afternoon at work. Coincidentally someone had just heated up a sandwich and right as the the bread fumes hit me the pain started. No, I'm not going to go into the controversial "glutened by smell" topic, I'm just reporting what happened. I've been feeling like crap pretty much ever since. Here is a list of everything I've eaten since Sunday. Yes, there are some processed foods here, but NONE of these products are new for me and I've been fine with all of these foods on a regular basis for a long time now. I don't know if something could have been cc'd or if I'm getting more sensitive to cc?

I'm most concerned about the processed foods I eat every day during the week - I'm thinking of cutting out the Zands, the Probiotic, and the Galaxy cheese (which I don't have all that often) since these all come from shared facilities (I think). I don't know what else to do. I don't want to start cutting out other ingredients when I haven't noticed a problem with them - I feel limited enough as is!

The other thing is that I have been reducing my grains after reading one of the Paleo books. I felt ok, but didn't quite feel like I was getting enough food, energy or fiber, and I was not regular (somewhat constipated). So I've re-introduced rice (I never totally eliminated it or noticed a problem with it).

I would love everyone's opinion! I'm really struggling with trying to eat a balanced diet, never having been a veggie lover. I usually take a calcium supplement, but I've been off it for a few weeks since the B12 scare. I've gone back to my B12 nasal spray (Nascobal) for now. I'm most worried that I'm somehow getting sick at work, but unless it's through skin or air contact I just don't see how. I even have my own microwave in my cube so I don't have to enter the kitchen.

I'm thinking this time it may be a dairy or soy reaction. This time I have no ideas.

What do you mean you have no ideas? You have plenty, and I can give you more. I'm extremely limited, due to my leaky gut.

whether I'm cc'd,

the occasional tempeh he makes in his own pan. Work is my biggest cc fear, because I'm surrounded by gluten guzzlers all day.

It was definitely the supplement - I hadn't introduced anything new and I felt the trademark severe stomach pain a few hours after having it. I know many people on this board are fine with this supplement, which is even more discouraging to me. The company does manufacture a B12 with wheat, so cc is a definite possibility.

A few weeks before that I tried Erehorn gluten free rice crispies and again got hit. They also manufacture on shared lines. So I can't do those. Sick for another week.

I've noticed I don't do well with green peppers and I've been testing out if I can get away with any amount. Seemingly no,

I can't do nightshades.

This current episode started Monday afternoon at work. Coincidentally someone had just heated up a sandwich and right as the the bread fumes hit me the pain started. No, I'm not going to go into the controversial "glutened by smell" topic, I'm just reporting what happened. I've been feeling like crap pretty much ever since. I don't know if something could have been cc'd or if I'm getting more sensitive to cc?

I kept getting more sensitive, and I do get hit by fumes - symptoms are not as bad nor last as long - it affects me gastrointestinally and neurologically for 1 and a half to 3 months, whereas cc will affect me for 6 months, which accidental wholesale ingestion does as well, but is horrendously disabling.

The only things I can eat, that you ate that day, or thought about, are the swiss chard and eggs, and coconut bliss.

I don't want to start cutting out other ingredients when I haven't noticed a problem with them - I feel limited enough as is!

I don't suppose you can afford hundreds of dollars for a 200 food sensitivity test? I had to do that.

I'm most worried that I'm somehow getting sick at work, but unless it's through skin or air contact I just don't see how.

I get sick from skin and air contact. But, you said you did not get the usual gluten neuro symptoms. Is the pain just abdominal, or is all over your body? Because most of the non-gluten, non-dairy things just give me fibromyalgia muscle/fascial pain, except things like rice and avacado. Lara bars got to really hammering me, due to the dates.

Chamomilelover, sorry to hear you are still feeling poorly. I'm no expert at this but you might want to try going on a simple whole foods diet for awhile and skip eating any processed gluten-free foods to see if it helps. And then reintroduce your favorite processed foods one at a time. If you have no reaction, then add another one the next week and so on. Hopefully that'll help to pinpoint a reaction you may be having to a particular food or foods.

JB, the pain is just GI. Luckily fibro/muscular pains have not been an issue for me.

SA, that's a good idea. I'm already processed-lite, but probably need to step back and get more methodical.

Today I finally slept through the night and am feeling better, so far. Which reinforces that I've probably been having one of my dairy reactions which are typically really bad for about 3 days. Disappointing because I'd really like to try to re-introduce dairy at some point. It doesn't look like I'm there yet.

SA, that's a good idea. I'm already processed-lite, but probably need to step back and get more methodical.

To my way of thinking you are nowhere near processed-lite. You listed a couple different gluten-free breads, curry mix, rice pasta, sausage, fake cheese, chips, almond milk, and ice cream. These all have the potential for CC, plus additives you could be reacting to.

If you have gotten so sensitive you got hit by fumes (ugh, I feel bad for you!) I agree with Sylvia that you might try eating only whole foods. Nothing out of a bag, box, or can except things you can rinse off like rice or dried beans. If it helps you know the processed foods are an issue.

I've had to spend almost 12 months carefully testing each and every new product I've re-introduced. It is incredibly had but been worth the trouble. I've learned that I had a salicylate (known as 'sals' for short) sensitivity. It is know to cause many of the similiar symptoms that gluten causes in celiac/gluten intolerant people. It is a minefield to try and isolate but popcorn and raisins where what led me on the salicylate path. In hindsight I would have done a challenge of these high salicylate foods rather than take many months to learn about them.
Freedom Foods (Australian) is one of only three producers I can eat. They are gluten/wheat/nut (etc) free factory and I've never had a problem with their products. (except when it comes to high sals which ain't their fault:) I highly recommend them.

Have you considered looking into your meat supply? Gluten fed -vs- pasture fed might make a difference?? It is expensive but I've always found that with meat the better you buy the less you want/need. More taste and nutrition by weight.

One of my "denials" for a long time was mushrooms. I've eaten them like crazy for most of the past 11 months but finally realised, recently, that I should have taken another posters information seriously. Some are cultivated on beds of wheat straw.
For a while I even peeled and stemmed them but the past few weeks avoided them altogether. Definitely (in my very limited and strict diet) made a difference.

I also think that I react to a lot of the other things on your list. The one that might be the worst could be the fish if it is farmed. I think that farmed fish tend to be fed gluten containing feed, and I don't know how well that would wash off when it comes to the extremely low levels of cc which some have problems with. Generally fish is considered to be gluten free and safe for celiacs, but I think that I have had problems with farmed fish. I am very sensitive.

I agree with the other posters. Go to a diet with few things in it, all unprocessed and then add things one per week keeping careful track with a food/symptom diary. That's what I do. It can take a lot of determination and dedication, but it is well worth it to be symptom free.

Periodically I end up having to challenge foods when I end up getting symptoms with my safe foods. Either something changes in the food processing, or I change in my sensitivities.

Sorry for the long post. I don't always post when I get sick because I feel like a broken record, but I just need to ask for everyone's advice, again!I've been having a rough few days. For the last two nights I've woken up at 3am and not able to go back to sleep and my gi system feels stopped, sure signs that I've been hit. I'm constipated with stomach pains, bloating, trouble urinating (just at night) gas, and as of today, dizziness. Because I don't seem brain fogged/mood affected I'm thinking this time it may be a dairy or soy reaction. It's not easing up, so I'm wondering if I'm being hit repeatedly by something I'm having at home. But I can't figure out what's causing it, so I'm really stressed out. Usually I can take a guess, even if I have no way of knowing if I'm right. This time I have no ideas.

I'm feeling soooo frustrated because I never seem to feel well for more than a few weeks at a time before something hits me. I've been gluten free for almost 1.5 years now and the whole cycle seems never ending, partially because I'm sick for so long after I get hit (I'm not even sure how long it really is). Even when I don't have other symptoms, I'm often struggling with constipation - I can't get a handle on whether I'm cc'd, getting too much/too little fiber, sibo'd, or what.

I don't go to restaurants (other than very rare Sushi with an ultra-careful chef) and our house is totally gluten, dairy and soy free except milk for my husband's coffee and the occasional tempeh he makes in his own pan. Pots/pans, kitchen is not a concern - it's all safe or been replaced and husband has his own sponge/mug for coffee and tempeh. Work is my biggest cc fear, because I'm surrounded by gluten guzzlers all day. I'm ultra paranoid about touching stuff, washing my hands, etc. I do pet the office dog now and then, but always wash my hands right afterwards.

About 3 weeks ago a new Vit B12 complex I tried (Nature Made) got me for about a week (felt like gluten and it hit me really hard). It was definitely the supplement - I hadn't introduced anything new and I felt the trademark severe stomach pain a few hours after having it. I know many people on this board are fine with this supplement, which is even more discouraging to me. The company does manufacture a B12 with wheat, so cc is a definite possibility.

A few weeks before that I tried Erehorn gluten free rice crispies and again got hit. They also manufacture on shared lines. So I can't do those. Sick for another week.

Back to my current predicament. On Saturday I had a small amount of green pepper (peeled and cooked). I've noticed I don't do well with green peppers and I've been testing out if I can get away with any amount. Seemingly no, as I had some gas and stomach pain that evening and the next day. However, the issues were gone by late Sunday, and I don't think this would still be the problem. I have never noticed the green pepper issues to go on for days like this.

This current episode started Monday afternoon at work. Coincidentally someone had just heated up a sandwich and right as the the bread fumes hit me the pain started. No, I'm not going to go into the controversial "glutened by smell" topic, I'm just reporting what happened. I've been feeling like crap pretty much ever since. Here is a list of everything I've eaten since Sunday. Yes, there are some processed foods here, but NONE of these products are new for me and I've been fine with all of these foods on a regular basis for a long time now. I don't know if something could have been cc'd or if I'm getting more sensitive to cc?

I'm most concerned about the processed foods I eat every day during the week - I'm thinking of cutting out the Zands, the Probiotic, and the Galaxy cheese (which I don't have all that often) since these all come from shared facilities (I think). I don't know what else to do. I don't want to start cutting out other ingredients when I haven't noticed a problem with them - I feel limited enough as is!

The other thing is that I have been reducing my grains after reading one of the Paleo books. I felt ok, but didn't quite feel like I was getting enough food, energy or fiber, and I was not regular (somewhat constipated). So I've re-introduced rice (I never totally eliminated it or noticed a problem with it).

I would love everyone's opinion! I'm really struggling with trying to eat a balanced diet, never having been a veggie lover. I usually take a calcium supplement, but I've been off it for a few weeks since the B12 scare. I've gone back to my B12 nasal spray (Nascobal) for now. I'm most worried that I'm somehow getting sick at work, but unless it's through skin or air contact I just don't see how. I even have my own microwave in my cube so I don't have to enter the kitchen.

Thanks!!!

I guess I'm what's called a super sensitive? I can't eat anything from a shared line. In fact, I try to get things from a dedicated gluten-free facility.

Of the things you've listed, what is the source of the vtamin D in the orange juice? Could it be soy?(ergocalciferol)

zinc lozenge..soy oil used in the molds they're formed in? I had to give up my cough drops due to that.

What oil were your sweet potato chips cooked in?

I can't handle the dates in Lara bars. Could you be getting intolerant to those? They're high salicylate.

Galaxy cheese..I have no idea what might be in that?

Other than those items..I would question the breads you're eating. May be that you're developing a reaction to the gums? Does the ice cream have gums..or dairy?

You mentioned a problem with night shades and you've had green pepper and then tomatoes (2 times)within a week. Maybe the combo was enough to give you a reaction?

I've had to cut out more and more foods too, because I get reactions. I understand how frustrating this is for you! I hope you can figure it out.

Yes, there are some processed foods here, but NONE of these products are new for me and I've been fine with all of these foods on a regular basis for a long time now.

Just in case it helps, this is something we ran into a few times in the last, oh, 8 months or so? A company that had been safe made a change that suddenly made it unsafe for us. One time it was something we should have noticed, because the company started adding new ingredients that weren't gluten, but made it unsafe for us, anyway. Another couple times it was a company shutting down one of their facilities, so their previously gluten-free product made in a gluten-free facility became a gluten-free product made on a shared line in a shared facility.

The impression I got was that the recession was the reason behind the facility changes. I suspect that the ingredient change might have been as well, because they added in less of an expensive ingredient and more of a cheaper ingredient.

I have a friend who, like you, also has a problem with soy. She's been hit big-time lately from a few different products, and every time, it seemed that they'd replaced a more expensive ingredient with a cheaper one (soy oil, frequently) or used soy in the processing now instead of something that was more expensive. Again, the recession seemed to be a motivating factor.

So basically, all I'm saying is that even if a product has previously been very safe, if you're checking on your foods anyway, might not hurt to do an update company check, so to speak, and see that nothing has changed recently in terms of gluten, soy, or dairy contact, you know what I mean?

0

T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

Well, you are eating a lot of nightshades. The common food nightshades are potatoes, tomatoes, peppers, eggplant. Udi's bread has potato in it. Most gluten-free baked items have potato. You might try eliminating all nightshades for a while and see if it helps. Another thing to check is soy. How many of your foods have soy in them? Eliminate both and then try them one at a time after a few weeks rest to recover. You may have problems with both soy and nightshades.

Hi - I hope I'm not too late for you to see the response to this. You sound really similar to me and I think I may have finally solved (at least one of) my issues. I don't think it is cross contamination at all with me when I react in a similar way - I think it's histamine intolerance. Look it up - a lot of what you are eating seems to be really high in histamines - ie. sauerkraut, sausages, cheese, smoked fish - and LEFTOVERS (BAD!) It has taken me ages to work out that my mood and stomach go up and down with food far too much for it to be minute gluten cross contamination - and that actually I think it's histamines. Interestingly B12 is bad for histaminosis, although I'm in the same boat as I have regular B12 injections, and now I've started I can't stop as I just feel diabolical if I don't have them now - even though my blood level is now quite high.

It might be worth a low histamine diet for a few weeks to see if that helps. I am basically doing that too - paleo but low histamine. Best of luck with it all!

I think you need to take a look at the dairy and what you are consuming in that department. For me, almond milk, ice cream and dark chocolate just "do me in". The ONLY dairy I can get by on (sometimes) is Greek yogurt and that's pretty much it. For ice cream, eat sorbet and leave off the dairy part. Also, for some reason, Udi's bread and I don't get along either. I'm not sure I could handle curry either. I think you need to take a closer look at what you are eating......you might just have to go to fish, chicken, veggies and some fruit for awhile and add back one thing at a time. My deep suspicion is your dairy though. If you are worried about constipation, start taking Metamucil and after about a week on that (if you take it daily), you should have no worries about that.

It's been just over a month since my original post so I thought I'd follow up with everyone.

I eliminated a bunch of stuff and got myself back to feeling consistently well for most of May, other than one slip up at my mom's house where she couldn't be bothered to use my designated cutting board (grrrr...) while making lunch. While otherwise pretty careful, she refuses to believe that the cutting board is a problem, but I digress.

I eliminated all supplements, the rice cheese, chicken sausage, kettle cuisine soup, peanut butter, and curry powder. I also briefly cut out nightshades (even though I didn't suspect them it's always good to test) and quickly reintroduced them with no issues. A couple days ago I reintroduced the curry powder and BAM that was it. For two nights now I haven't slept, total anxiety and brain fog, gas and nausea, burning stomach pain and fatigue/dizziness.

Which I find really interesting because when I first introduced the curry powder in March (same bottle the whole time) I watched it carefully and felt fine. Big picture, though, is the timing does align with when I mysteriously started not feeling well, duh. Someone posted that when they introduce a new item they test it three times before considering it safe and I guess that was the case here. If cc is the issue, maybe I just didn't get hit the first time around.

I emailed the company and have included their response below. I think this is a good company and because they are completely gluten free I thought it would be fine. However, sourced spices can come from anywhere (lesson learned). I'm open to the possibility that I'm reacting to one of the actual spices in the mix and not gluten, but my symptoms are totally my glutened symptoms so I doubt it.

Thank you for your inquiry. Gluten allergy and sensitivity is a growing problem, and many people try to avoid gluten in their diets. At Frontier we eliminated all gluten-containing ingredients and products, and, when sourcing new products, we specify that they not contain any gluten. However, our facility is not certified as a gluten-free facility, and we test only our certified gluten-free products for the presence of gluten. We don't make gluten-free claims for any other products because even tiny amounts of gluten can be a problem for some people, and these may be present in the facilities of our suppliers of ingredients. We do offer a large selection of gluten-free Simply Organic products that are tested and certified gluten-free by GFCO.